Sunday, December 25, 2011

Coping with New Reality 12/25/2011

Hi All!

It has been awhile since I did an update. For the last couple months I have suffered from Caregivers fatigue I had decided not to write anything since I felt so down most of the time. As hard as I tried to get to a regular positive state of mind. I could not hold onto it for any substantial amount of time.

Joe is still in remission from Mantle Cell Lymphoma as of days of tests at MD Anderson Cancer Center at the beginning of December. Dr. Romaguera is pleased with Joe's blood counts but still wants him to continue infusions of IVIG on a 4 to 6 week schedule thus his next one will be the first week of January. Dr. Verstosvek is also satisfied with Joe's blood counts on the basis of his Myelofibrosis. Personally I have a concern that his counts are on a slow curve downhill but the doctors says he is OK. Joe continues to have to have Mohs surgery for regular pop ups on his face for squamous and basal cell cancer, His last one on the upper part of his ear has taken over two weeks to heal and still he giving him pain.

The most troublesome of Joe's issues is his mental and reasoning capacity. His personality is hard to deal with since he has no interest in much of anything. His lack of communication to me is difficult since I have to analyze his body language and the tone of his voice to determine how is really is. Too many days he wakes up grumpy and any time something will really set him off. I am worn out dealing with the downer personality and constantly trying to figure out how to boost his mood. I miss the intimacy that has been gone for while and it dwells on me more and more.

Yes, I am taking an antidepressant and Joe refuses to acknowledge he is depressed. Once again on a visit to my son's home, he was grumpy and did not participate in conversation. He comes across as he can't get out of there fast enough and it has happened too much in the last year. My granddaughters and son bring me joy but Joe makes it stressful. He is draining me of my self esteem and happiness. Yes, I have discussed this with him but he is not responsive which makes the situation even worse. It is depressing being around him.

My support list encouraged me to write on my blog again since it is a method to get my frustration and stress lessen since it worked during the battle with his Mantle Cell Lymphoma.

I planned some incredible dream trips that were dreams of his or the both of us. I wondering if I have the energy to deal with his gloomy personality and the lack of desire to do anything but go out to eat. Eating out gives him something to look forward to but it is the only thing and that is the issue.

When some very good people tell me what a great life I have and that I should be happy but that makes me even more sadder. Until you walk in another person's shoes, you really do not know what is going on.

I am aware of the many blessings that are there but I need emotional support and a connections that is totally lacking. I can not help that way I feel.

The day WILL be brighter tomorrow because I will find a way to make it that way. The issue is that I will be knocked down.

Where has emotional love gone? Why does it have to be a one way street all the time?

Bah Humbug!


  1. I am so sorry that you are sad and what I said to you in Houston was not helpful. I can also sympathize with Joe. It is not easy to be upbeat when you are so tired. I know he would be lost without you, and maybe you need to get away for a few days by yourself, so that he can realize how much he treasures you. If he needs someone there there are people who will come in to take the load off of you. So many of us do treasure you. You are one of the angels special people.


    Barbara B.

  2. Dear Bonnie,

    You are such an encouragement to so many others. You also have to let it all out sometimes.Do not try to leave it all up to you.You are doing a wonderful job of taking care of Joe and just loving him. I am the one complaining to my husband about how badly I feel or how concerned I am about my health and the care I get. He too trys to cheer me up and I appreciate it but sometimes I am too tired or sick and sometimes I do not think he "gets it" and I am cranky. I constantly apologize and feel guilty that he married me and I put him through this. This wasn't supposed to be this way. We a long for the good times or what was supposed to be. You have been wonderful to Joe and believe me, he knows it. When you are ill, sometimes it is difficult to show appreciation when we should all the more so. Never blame yourself or Joe for his lack of enthusiasm. Maybe his is limited. I admire your stamina even when it fails you. You are a breath of fresh air. Carol

  3. HI. My father was recently (2 weeks ago) diagnosed with Mantle Cell Lymphoma. He is seeing doctors and getting all of his tests done before starting treatment next week (April 30, 2013). I need some help. He has expressed interest in speaking with people who have had this type of cancer and survived it or even still battling it. He is 72 years old and looks 55. Well not now, of course, but still has a lot of life left in him. He is seeing Dr. Goy in NJ. He likes him and keeps a very positive attitude about this upcoming battle. I just want him to get connected with people who have gone through this. If anyone can help please email me at My name is Tony. I appreciate any help we can get. Thank you.